Day 67: The clients are revolting #107days

Day 67 was adopted by Amanda, pictured here with her daughter, Jazz.

Jazz&Amanda

Amanda is founder of The Open Nest and in this post she shares her own thoughts, feelings and experiences as a professional, as a mother, and as a supporter of #JusticeforLB.

When I was a social work student I specialised in working with groups of people who needed to access social care but were often voiceless or suppressed within the system. As with all those who seek state support these people were referred to as ‘clients’ of the services. This is actually where it began to irk me. Clients as a word suggests business. Not as is in ‘clients have a strong voice and will not be messed with’, but rather clients are one cog in the big wheel of the business and the huge industry of care that we seem to have developed in this country. By a twisted world upside down effect it seems those in need can now be quite comfortably viewed as a bit of a problem, a glitch or even a drain on the ‘care’ industry.

As part of my practice based learning. I devised a ‘Clients Committee’ model. The purpose was to facilitate an independent user led group made up of adults with learning disabilities (another label that now irks me seeing as I’ve met many social care managers who seem to find it harder to learn than their clients). Anyway, the dude ‘clients’ attended an adult training centre and once a week I would take their meeting minutes for them based upon their conversations around changes in the support services they felt were needed. A lot of the talk centred around rights to have relationships, to choose their own individual style and to have more funding for the meeting to get better sandwiches. Nothing changed. It was an ‘interesting’ experiment, a token gesture. It was still a shit sandwich.

After proceeding to work with ‘clients’ of women’s refuges, traveller sites, drug and alcohol projects and HIV services, I had seen enough. In almost every area of social care I saw the ‘clients’ often remain static in their position of powerlessness and unmet need whilst workers gained power, very often by being the agents of budget control and the keepers of the status quo.

Some things I have experienced in working practice, although seemingly small, stand out. I was once given the job of making sure ‘clients’ with HIV or AIDs who came into a drop in centre could access healthy and nutritious food. The budget to feed up to 12 clients per day was £12. I became a master at fresh vegetable and fruit shopping. One day the big bosses from the NHS were coming for a meeting. As well as my usual £12 for the ‘clients’ the manager of the project gave £50 that day for a meeting ‘buffet’. I felt furious. When I questioned this I was met with a wry smile (a manager’s special) and a response that patronised me as being a quaint but outdated revolutionary.

Incidents of this nature were not rare and led me to feel personally unable to work inside such systems. Subsequent academic study led me to analyse, once again, how certain groups of people are marginalised, although this time it was culturally through the mediums of the popular press and television.

Everything I experienced led me to a life changing decision to become an adoptive parent to a very young dude (whose mum was also a dude) and who needed some full on support and advocacy.

In that process my daughter and I both, like her birth mum, became ‘clients’ of the social services as well as the health authority. In the eyes of the care system I became just ‘mum’. Declawed and unprofessional. My daughter became a person talked about in her presence as if she were invisible and whose name they could never spell right in her correspondence no matter how many times she told them.

When Mencap were eventually wheeled in to support my daughter they covered the backs of the poor practitioners whose incompetence eventually caused her serious harm. Even a National charity for dudes is not beyond bending or editing the truth, of selling their ‘clients’ out if commissioning is at stake. And they are not the only ones.

There had been a gap of many years between my training to work with social care ‘clients’ and my becoming one myself. I thought things would have moved on and ‘lessons would have been learnt’. More fool me. Despite the annual reporting of abuses in social care settings and harm coming to clients of the health and social services being featured on news items and documentaries, poor practice, tokenism and budget led interventions seem still to prevail.

Some practice failures may be small but when on the receiving end they can be the proverbial straw. My personal ‘shit practice gong’ of this month goes to a health visitor who rang one of my family members at home to congratulate her on the birth of a lovely baby daughter and to arrange a hello visit. Would have been a thoughtful gesture if her baby hadn’t been still born the previous week.

But now to Connor. I didn’t know him or his family but I have felt personally touched by his appalling and avoidable death and the strength and bravery of his family and friends in the darkest of times.

Initially the shock was in hearing he had died. This shock became compounded by the response from Southern Health to his death and to his mothers grief. It is truly incomprehensible to me.

I cannot pretend to feel the grief or have any true understanding of what Connors family are going through. But I know I genuinely feel empathy, a sense of there but for the grace of god go all of us and a really huge feeling of anger.

My daughter was on the verge of being admitted to an assessment centre not very long ago and the conversations with me around this potential intervention chilled me to the bone. She would not be able to have contact with me initially nor could she take in her security pillow, her phone or any familiar objects from home. The inference from the start was that ‘we need to see how she is away from you because it’s probably some family or home issue that is the real problem”. I read with horror Mark Neary’s recent blog about his sons anxiety at being severed from his place of safety in the name of a professional assessment. But our children didn’t die.

I know there are great and emotionally intelligent expert professionals in both social work and health care and I know professional bashing is a hard stance to take in times of low resources and outsider aims at ‘criticise to privatise’, but how could Southern Health be so cruel.

You can’t buy or train in truth, empathy and remorse anymore than you can illicit forgiveness and understanding via a cold bureaucratic and funded PR fob off.

The response to this case from Southern Health bosses shows the emotional maturity of a small child who is denying they ate the chocolate when it’s clearly all around their mouth. I find it embarrassing.

The people who support Connor and his family are collectively angry. We don’t feel like being particularly polite or forgiving of the unavoidable death of a healthy young person through negligence and poor practice. This isn’t something that happens to all of us but the lead up to it, the ignorance and pseudo care that allowed it to happen is recognised by many of us in our experience of being a ‘client’ or the relative of a ‘client’.

Southern Health can accuse Sara of being difficult to handle, suggest she might perhaps move on now, infer that Connor was just another ‘client’ who sadly had an unfortunate accident, that those seeking justice for him and other dudes are akin to internet trolls, but it won’t wash. Its bigger than them. We are far too revolted and Sara’s strength as a campaigner in love and honour of her son means she is now leading what could easily become a significant and broader revolution in how society views, talks about and supports all dudes in this country.

I for one am living in hope of significant cultural change being instigated by this campaign. No matter what Southern Health do to discredit the integrity of Connor and Sara’s experience, no matter how much they cover their eyes, ears and especially their backs, it wont change that.

You still have time to get involved with the #107days campaign if you wish to join Amanda, and so many others, revolting for a better society. Next weekend, Sat 31 May, is the party night to end all party nights, and it would be great to see some of our online supporters in the flesh!

Day 16: Ruth’s story #107days

Day 16 was adopted by a pair of sisters in Northern Ireland. Theresa and Ruth (not their real names) were touched by LB’s story and got in touch to ask if it was ok to share a positive experience of an assessment unit. We’re delighted to be able to share their story, and very pleased that Ruth had the life saving support of the hospital assessment unit. Theresa shares their story below:

So here we go with our story. My sister Ruth is two years younger than me. Throughout our lives we have shared many high points – the first time she travelled to school by public transport, the first time she went on holiday with her friends, when my two daughters were born. But we have also experienced tough times.

When Ruth was in her early twenties we secured a place in newly opened supported housing only five minutes away from us. My parents felt all our prayers had been answered. All went well for a couple of years. The manager had a lot of experience with people with a learning disability, however he retired and our nightmare began. A new manager arrived. She had no experience working with people with a learning disability, but had done lots of research at university. She came with new ideas including person centeredness, but she didn’t really understand Ruth and her needs.

The new manager felt Ruth had the right to choose the support she needed and if that meant she didn’t get washed for days, didn’t do her dishes and ate what she wanted, that was fine as it was her choice. The new manager also closed the communal area in the evenings and Ruth became socially isolated. The new manager also developed her own day care and Ruth lost contact with friends she had had for years. Slowly Ruth became depressed and ended up weighing 28 stone. Her life was under threat. The manager would not listen to family (how many times does this story have to be told).

The consultant psychiatrist felt Ruth needed to go into hospital. I knew my mum and dad couldn’t take her and although I was 8 months pregnant I volunteered to take her myself. We arrived at the hospital. It was an old building with a locked door and bars on the windows. The sleeping accommodation was a dormitory and the bathroom was shared. Ruth was in tears and I was trying to be brave. The door to the ward opened and a smiling nurse greeted us, “off you go we’ll take care of her”.

I don’t know how I drove home. We went to visit Ruth after a week and what a transformation! She was happy and smiling. She looked well cared for. She had lost weight and she had lots to tell us. Ruth stayed in hospital for 10 months. She gained confidence and lost 6 stone in weight. When Ruth returned to her flat, with a proper person centred plan, she was doing well. However the staff did not listen to the hospital staff.

Soon we were hearing again “She’s an adult. She can make her own choices”. Within 18 months we were back to the old ways. Our family was almost destroyed as no one was listening to us. Ruth eventually got to 36 stone and was threatened with a formal admission. At this time I negotiated with the hospital and she returned as a voluntary patient. Ten months later and 12 stone lighter, thanks to the wonderful hospital staff, she moved to a residential facility near to us where she remains.

There are good days and bad but mainly good. Ruth has a beautiful room with a view of the sea. She has always loved boats. When asked about the time in hospital Ruth says there were good times and bad, ‘the staff treated me fairly and listened to me’. I say without the hospital she wouldn’t be here, and our family would have been devastated.

Ruth and Theresa now do training sessions for social workers to remind them that behind every “case” is a family with a story.

We have asked each contributor to provide a photo if possible, but Theresa and Ruth couldn’t get a photo they both liked so they asked me to find a picture of a dog:

Ruth loves dogs. I have told her all about the campaign and she is thrilled to be part of it and hopes our story helps others.

So with thanks to Ruth and Theresa for sharing their experience, we end this post with Chunky Stan, LB’s family dog who you can read more about their relationship here.

ChunkyStan